alport uk


past information days

The 1st Alport Information Day
December 2012

An informal event, at Westminster Boating Base, overlooking The Thames, that was created by those living with Alport Syndrome and generously supported by a number of individual donations and the organisations below:


watch the videos of all the speakers from the day

agenda for the day
flyer sent to all renal and genetics units that advertised the day

The 2nd Alport Information Day
September 2013

We had a fantastic patients meeting in Edinburgh on 7 September, 80 turned up,meeting up with our Scottish patients and families. We had fantastic speakers again, Professor Neil Turner, Professor Frances Flinter plus local people to talk about hearing and transplantation. With it being a slightly smaller group there was good time for questions and answers after each session. It was held the Surgeon’s Hall and kindly hosted by Professor Neil Turner with fantastic support from Harriet Gordon and Emma Farrel. We now have another 70 people connected up locally to support each other and connected to our wider national support group. One of the topics we discussed was a ‘toolkit’ to help people living with Alport Syndrome. The feedback from the group is being incorporated to our project review of the psychosocial aspects of living with Alport Syndrome.

flyer sent to all renal and genetics units in Scotland to advertise the day

The 3rd Alport Information Day
February 2015

It was wonderful to see so many people at the 3rd Alport Information Day in Birmingham.  A large majority were new to these events.  Again we had fantastic speakers talking on all subjects relating to Alport Syndrome, please see the agenda below.  There was plenty of time for Q & A after each speaker, which we have transcribed in the support section.  It was held at Fazeley Studios in Birmingham, a superb venue and we had wonderful nannies from Elf Sitters to keep the younger children happy.  The teenagers spent a session creating an instagram page for alport Uk; details on our teenagers and young adults page.  Thank you to all those who came and help make another successful Alport Information Day.

Alport Information Day Birmingham

Birmingham Agenda

Here are some of the topics to download

Alport Registries – download file

Hearing Loss – download file

DELTA in the Educational setting – download file

Alport-Syndrome-and-the-Eye – download file

The 4th Alport Information Day
November 2015

Our 4th alport Information Day was held in Manchester on 21st November 2015.  We had lots of brilliant speakers ranging talking about all things related to Alport Syndrome.  People came from far and wide and were mostly new to the event.  It was held at the Castlefield Rooms in Manchester next door to the canal.  This time the event attracted some more teenagers and they helped put together a fantastic poster all about Alport Syndrome from their perspective.  Please see below for the downloads on what subjects were covered.

National Alport Information Day Manchester Nov 15

Manchester Agenda

Here are some of the topics to download

Hearing in Alport Syndrome – download file

Alport Syndrome and the Eye – download file

Alport Research – Registries – download file

The History of Alport Syndrome – dowload file

Alport Syndrome Kidneys & Research – download file

Be Salt Aware – download file

The 5th Alport Information Day
January 2017








Back at one of our favourite locations, Westminster Boating Basin, our 5th alport Information Day took place on 7th January 2017.  There were lots of people old and new.  We had a wide range of speakers covering topics including research, clinical trials, alports in women, and top tips for carriers of Alports Syndrome.

London Information Day Flyer

London agenda

Here are copies of the leaflets that were handed out on the day that can be downloaded

KI Final Meeting Report Online OxfordJuly 2014

Expert Guidelines JAN 2013

Alport Workshop Goettingen 2015

Alport syndrome in women and girls

Young Adults Workshop

University of Manchester’s Innovation Centre was the venue for the Young Adult workshop. Professor Rachel Lennon’s lab at the Wellcome Trust Centre for Cell-Matrix Research gave the Alport families a tour of their labs and explained the research they are doing on Alport Syndrome. The young adults and lab researchers together then used images from the lab to design and make their own t-shirts. The young adults interviewed some experts from the lab and via Skype to create four short videos to explain topics such as ‘know your numbers’, current research in Alport Syndrome, women and girls with Alport Syndrome and what its like living with Alport Sydrome.

Thank you to Cerri Harrop, Kory Stout and illustrator Eleanor Beer for helping produce the videos. There was also time to do a Tree Top Trek at a park in Manchester.

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Thank you to our inspiring patient and film maker, Sam Clarke and ‘Scrap the mask’ for making this thought-provoking video to share what we do at Alport UK to engage and inspire patients in the exciting and vital research on Alport Syndrome being done by Professor Rachel Lennon and her wonderful team.


future events

Watch this space for more events in 2019 and beyond



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